Posted in Developmental disability, Developmental disability service system, HCBS

Isolation: The big lie of community-based services

Isolation in the DD system is the norm for many adults.

Some of us are so severely isolated that the only people who know we exist are the agencies that provide us services.  And families, if we have one.

There is a long history of putting people with developmental disabilities together in institutions and other segregated situations:  Large developmental centers, group homes, segregated special education schools, psychiatric institutions, ICF/DDs, sheltered workshops, and many others.

We are rightly moving away from all that.  Forcing a bunch of people to live and spend time together because we all have developmental disabilities is wrong, inhumane, and dangerous.

But the current DD system has taken advantage of this trend towards isolation.

We never see each other.

My agency has 670 adult HCBS clients with developmental disabilities.

There are social events, often put on by the agency.

I am not usually able to make it to those events.  But I can’t avoid noticing that when I do show up, it’s always the same 10 or 20 people at them.

So most of us have little to no contact with each other.

This makes it damn near impossible to organize to advocate about the way we are being treated.  We don’t even know each other.  There are, as I said, people so invisible to the rest of the world that only the agency knows they exist.  This puts us in a terrifyingly vulnerable position.

But if you’re from VOR and gonna use that to defend institutions, go away.  Putting people all in one place doesn’t protect us, it does the opposite.

But so does isolating us.

And we are more than just isolated from each other.

We are isolated from our communities.

This is the big lie of community-based services.

People love to talk about how we are integrated into our communities, included into our communities.

For the most part we are not.

At best, we are physically integrated.  Sort of.  This means that we live in places where nondisabled people live.  People love to point to this.  They love to say that we are living these amazingly inclusive lives in the community.

But mostly we don’t.

I live in a building where people without developmental disabilities also live.  This means, to the system, that I am in a community-based program and am successfully integrated into my community.

I don’t know my neighbors.

I have no personal relationships with anyone nearby.

I don’t see the one local friend I have (who also has developmental disabilities).

Most people don’t know I exist unless they see me on the street and recognize me.

But I don’t get out much.

So pretty much the only people I see are DD agency employees and medical professionals.

I have a hard time keeping up relationships with people, because of the way my brain works, rather than a lack of interest.  I have spent years completely isolated from friends I care about very much, without getting any help to do so.

Being isolated like this warps your mind.

Spending time only around agency staff warps your mind.

You forget — if you ever knew — what an acceptable life is, what acceptable treatment is.

You begin to accept whatever the agency tells you because it’s all you hear.

Your world gets smaller and smaller, weirder and weirder, and it creeps up so slowly you don’t always even notice.

I have a good relationship with all of my staff but it does not mean I am not severely isolated.

Isolation has all kinds of effects on us.

It makes us easier to control.

It makes us easier to abuse and neglect.

It makes it harder for anyone to notice if someone is doing us wrong.

It makes us lonely and desperate.

It warps our minds until we start believing the agencies even if everything in us tells us it’s not true.

And it prevents us from getting together and organizing.

All of these things lead to worse lives for us.  They lead to horrific abuse and neglect being acceptable.  They lead to terrible things.

We are doubly isolated.

We are isolated from everyone in our surrounding communities.

We are isolated from each other.

These things are dangerous.  These things can even be deadly.

This is why I want to write about things like this somewhere someone will read it.

And the solution, by the way, is not a return to previous kinds of institutions where we are all together.  Those are just as set up to allow abuse and neglect, if not more so.

There is a trend to discourage social relationships between people with developmental disabilities and each other.  This is at best a misguided response to segregation, and at worst a deliberate effort to keep us powerless and disconnected so we don’t even know what is happening to each other.

The solution is for us to truly be included in our communities.  Which means being able to have the social relationships and ties that everyone else is able to have.  Both ties to nondisabled people and ties to other people with disabilities.

We aren’t there yet.

Not by a longshot.

The idea that we are all included in our communities because we are (more or less) physically present, is a big lie.

And it’s a lie that hurts us all.

The solution is not to keep us from having our own homes or bring us back to how things were before.

The solution is to ensure that real inclusion in our communities, with the real social ties and real choices involved, is actually happening.  We need human connection, and staff aren’t a substitute for that.


Hufflepuff. Came from the redwoods, which tell me who I am and where I belong in the world. I relate to objects as if they are alive, but as things with identities and properties all of their own, not as something human-like. Culturally I'm from a California Okie background. Crochet or otherwise create constantly, write poetry and paint when I can. Proud member of the developmental disability self-advocacy movement. I care a lot more about being a human being than I care about what categories I fit into.

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